Recently Dx w/ Seizures and Migraines - Topamax Q.

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Sep 2010
Total Posts : 2
   Posted Today 9:38 AM (GMT -6)   
I was diagnosed with seizures (affecting the left side of my brain) and migraines - this week! Long time with symptoms, just finally got the referral to the neurologist who did the tests.

I am on my 2nd full day of Topamax and having awful headaches! It's kind of a constant headache that just hasn't let up since that first dose 2 days ago. I'm willing to go the length of this if there is an end in sight. Does it take awhile before the initial headaches wear off? Do most people get "starter" headaches with this drug?

Already after 2 days, I can't stand the taste of Diet Coke and that's really the ONLY thing I ever drink. Milk tastes sour and food in general has become kind of gross. Other than potato chips :)

I've read a lot of negative, with little positive, about this drug, online, so far. Is it all really that bad?

Regular Member

Date Joined Sep 2010
Total Posts : 26
   Posted 9/27/2010 8:10 AM (GMT -6)   
Hi, I was diagnosed with Occipital Neuralgia about two months ago and the doc prescribed Topamax and it had some very unnerving side effects. I actually felt like I was on the verge a a seizure which is rather ironic considering the tablet is meant to prevent a seizure. Because I already have chronic headaches (24/7) this was prescribed as a muscle relaxant. I now take Rivotril (Clonazepam), which seems better for me personally. (Although it does make you sleepy/tired ) Its a similar medication to Topamax.
I hope you find something more suitable because you don't need the added stress of side effects along with your recent diagnosis. I wish you the best.

Regular Member

Date Joined Jan 2010
Total Posts : 197
   Posted 9/27/2010 4:29 PM (GMT -6)   
How large of a dose did they start you on? I did not get the soda effect until 75mg. It did taste AWFUL at first. But now it doesn't taste bad, just flat. I can't sense carbonation at all. I can be watching a glass bubble away, obviously fully carbonated, and it tastes as flat as a soda that has been left out all night. I went up in 25mg per week increments. I had a 24/7 migraine to start with, so I can't say that I noticed a change in headache when I started it, so I can't answer that question. At 50 mg, I had several headache free hours per day, which was a Godsend for me. I am now at 125mg daily and am for the most part migraine free. For me, being largely migraine free has been worth what I consider to be the minor inconvenience of the side effects, but everyone reacts differently to medications, and it is an individual decision as to what is tolerable. Giving up soda to be migraine free was a small concession for me :) I've lost some weight, and I go through periods of time where food holds little interest to me, so when I have a craving, I indulge, regardless of what it is for. When I first started, and when my dose adjusted, there was a few days where many foods tasted strange, but that usually went away once my body adjusted to the new dosage. The soda thing has not. I've been on topamax since May. I get the standard tingling in my hands and feet, but it is transient and usually only lasts a few minutes at a time. Compared to the debilitating pain of the migraines, I'm fine with the trade-off. It took about 3 months to get me to the dose I am at and get my migraines stabilized.

I was a bit apprehensive of what I read on the internet too, but then I had to remind myself that people who are happy with a product or service rarely take the time to put a review out on the internet, or anywhere else. Have a complaint, and we tell tons of people. Have a compliment, we tell a few. So I try to remember that for every horror story out there, there is likely a lot more people who had positive results and never had the idea to go post their experience on a web site. :) I wish you the best in your search for pain relief. If topamax winds up not being for you, I hope that your doctors are able to find something that does help you with your pain.
Fibromyalgia, High BP, Migraines, anxiety, Non Celiac Gluten Intolerant
Current medications: Topamax, Maxalt, Lotrel, Wellbutrin

New Member

Date Joined Sep 2010
Total Posts : 2
   Posted 9/27/2010 7:53 PM (GMT -6)   
Thank you both for you replies.

I'm on day 5 at 25 mg per day in the evening. It was the second day that I noticed, after I'd dumped 3 fulls cans of diet coke (my favorite!), that something was a bit off. That's when I started to google. I agree with your assessment Caligirl, it's true that most people don't go out of their way to tout the good but preach the bad. I try very hard to be balanced. I called my neurologist and she recommended that I take 2 and half aleve and 1 excederin for migraine every 4 hours when I have migraine pain and it does lessen the headache somewhat. They do return but it seems like they're coming with less intensity each time. She seems to think that the Topamax isn't the culprit for the headaches and just an unfortunate coincidence.

My migraines began very recently, within the last 3 months. I've had terrible vision disturbances and odd smells for the last 2 years that have progressively gotten worse which led to the EEG and the diagnosis of seizures. Hopefully, the headaches will go as quickly as they came. I'm not yet seeing a difference with the visual disturbances or smells but I haven't graduated to the full dose of Topamax yet either.

I don't mind giving up the diet coke... toooooo much! :) Thanks again!

Veteran Member

Date Joined Dec 2008
Total Posts : 2386
   Posted 9/30/2010 1:24 AM (GMT -6)   
You might want to consult your physician again. I was a Topax "experiment exhibit" before it became approved due to all of my migraines. They told us in the study flat out you work yourself up to it. I started on 10 mg for a few weeks then to 25 mg. At first it seemed like it wasnt working. A month after I started taking it, I went from my 20 migraines a month to 3 to 4 migraines a month. I had the real deal. It was a 3 month study. then it was approved by the fda and my doctor kept me on it til I found my triggers. Topamax is a medication for seizures and migraines.
Don't Care Bout Nuffin No More, Guess I shouldnt even be in this world

Veteran Member

Date Joined Jun 2010
Total Posts : 2268
   Posted 10/8/2010 4:29 PM (GMT -6)   
Don't intend to hijack the thread, at the same time have a question.

I am on my way to Topamax as beta blockers aren't helping with migraine and I get it every 3rd day. I am worried about Topamax side effect of loss of memory. Anyone taking Topamax noticed this?

Male, Otherwise healthy, Non-Smoker and a teetotaler.
Flared for about a year before colonoscopy and official diagnosis of IBD on 23rd March 2007, at the age of 30 years.
Currently taking -
Colazid 2250mg 3X a day,
Azathioprine 150mg a day,
Salazopyrine Suppository 500mg, one every night (Stopped since 2nd June 2010)
Mesalamine 1gm enema 2X a day (since 2nd June 2010)
Metaprolol 100mg, once a day for migraine (since 13th July 2010)

Otherwise serious migraine headache. Migraine is affecting quality of life way more than IBD.

I just give suggestions. You decide what to do with it.

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 25, 2018 11:35 PM (GMT -6)
There are a total of 3,006,698 posts in 329,380 threads.
View Active Threads

Who's Online
This forum has 161845 registered members. Please welcome our newest member, StanInCA.
147 Guest(s), 3 Registered Member(s) are currently online.  Details
Tim G, Sabssssss1996, InTheShop